{"id":17409,"date":"2026-07-15T10:31:50","date_gmt":"2026-07-15T10:31:50","guid":{"rendered":"https:\/\/mecfs-research.org\/?p=17409"},"modified":"2026-07-20T14:42:30","modified_gmt":"2026-07-20T14:42:30","slug":"news-ndpe-patient-involvement","status":"publish","type":"post","link":"https:\/\/mecfs-research.org\/en\/news-ndpe-patient-involvement\/","title":{"rendered":"National Decade Against Post-Infectious Diseases: Ministry sets up patient participation"},"content":{"rendered":"<div data-elementor-type=\"wp-post\" data-elementor-id=\"17409\" class=\"elementor elementor-17409\" data-elementor-post-type=\"post\">\n\t\t\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-4c6a7b8f elementor-section-boxed elementor-section-height-default elementor-section-height-default rael-particle-no\" data-id=\"4c6a7b8f\" data-element_type=\"section\" data-e-type=\"section\" data-settings=\"{&quot;rae_animations_entrance&quot;:&quot;none&quot;}\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-6cdf9c06 rael-particle-no\" data-id=\"6cdf9c06\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-368c0762 elementor-widget elementor-widget-text-editor\" data-id=\"368c0762\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p><strong><strong><strong><strong>We are supplementing our previous reports on&nbsp;<span style=\"text-decoration: underline;\"><a href=\"https:\/\/mecfs-research.org\/en\/news-ndpe-update-jun26\/\">the progress of the implementation of the National Decade against Post-Infectious Diseases<\/a><\/span> and our <a href=\"https:\/\/mecfs-research.org\/en\/news-ndpe-comment-first-funding-measure\/\"><span style=\"text-decoration: underline;\">commentary on the first funding guidelines under the \u201cNational Decade\u201d<\/span><\/a>&nbsp;with an update on the current status of patient involvement in the \u201cNational Decade\u201d committees.&nbsp;<\/strong><\/strong><\/strong><\/strong><\/p>\n<p><!-- \/wp:paragraph --><!-- wp:paragraph --><\/p>\n<p>With the launch of the National Decade against Post-Infectious Diseases on 30 January 2026, a steering group was set up by the Federal Ministry for Research, Technology and Space (BMFTR) to provide further coordination. The patients\u2019 perspective is represented on the steering group by the German Associaton for ME\/CFS and BAG Selbsthilfe. Three working groups were successively convened, focusing on the following topics: 1. translation (covering treatment development, among others), 2. data and biosamples (data collection and research infrastructure), and 3. care-related research (issues pertaining to health care provision). An overview of the activities, plans, and objectives is provided in the presentation given by<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:paragraph --><\/p>\n<p>Three working groups (WGs) were since set up, focusing on the following topics: 1. Translation (covering treatment development, among others), 2. Data and biosamples (research structures) and 3. care-related research. An overview of the activities, plans and objectives to date is provided in the presentation given by&nbsp;<a href=\"https:\/\/events.mecfs-research.org\/de\/events\/conference_2026\/videos\/natascha-sommer-nationale-dekade\"><span style=\"text-decoration: underline;\">Prof. Dr. Natascha Sommer on the National Decade and the post-COVID research landscape<\/span><\/a>&nbsp;at the ME\/CFS Symposium 2026.<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:paragraph --><\/p>\n<p>Many organisations representing those affected have campaigned for strong patient involvement in the committees of the National Decade. In each of the three WGs, two representatives will now bring the perspective of those affected to the table. A total of six organisations are represented in the three WGs:&nbsp;<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:list {\"ordered\":true} --><\/p>\n<ol class=\"wp-block-list\">\n<li style=\"list-style-type: none;\">\n<ol class=\"wp-block-list\"><!-- wp:list-item --><\/ol>\n<\/li>\n<\/ol>\n<ol class=\"wp-block-list\">\n<li style=\"list-style-type: none;\">\n<ol class=\"wp-block-list\">\n<li><strong>Translation<\/strong>: Fatigatio Bundesverband ME\/CFS &amp; NichtGenesen Kids\n<\/li>\n<li><strong>Data &amp; biosamples<\/strong>: German Association for ME\/CFS &amp; ME\/CFS Research Foundation\n<\/li>\n<li><strong>Care-related research<\/strong>: Long COVID Germany &amp; Elterninitiative f\u00fcr ME\/CFS-kranke Kinder und Jugendliche<\/li>\n<\/ol>\n<\/li>\n<\/ol>\n<p><!-- \/wp:list-item --><!-- wp:list-item --><\/p><p><!-- \/wp:list-item --><!-- wp:list-item --><\/p><p><!-- \/wp:list-item --><\/p>\n<p>Responsibility for communicating the content of the \u201cNational Decade\u201d lies with the initiator, namely the BMFTR.<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:paragraph --><\/p>\n<p>The participating organisations are fully committed to ensuring that the \"National Decade\" will be consistently patient-centred and that research funding is used effectively. The participating organisations have each appointed suitable patient representatives\/experts with a group perspective and specific expertise for the committees. In doing so, they see themselves as advocates for all forms of the diseases, including ME\/CFS of any cause, post-COVID syndrome and post-vaccination syndrome.<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:paragraph --><\/p>\n<p>In addition to the direct representation on committees mentioned above, the BMFTR has announced further formats for dialogue with other patient organisations (see our&nbsp;<a href=\"https:\/\/mecfs-research.org\/en\/news-ndpe-update-jun26\/\"><span style=\"text-decoration: underline;\">report on the BMFTR\u2019s first virtual exchange with 16 patient organisations and initiatives on 9 June<\/span><\/a>).&nbsp;<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:paragraph --><\/p>\n<p><!-- \/wp:paragraph --><!-- wp:spacer {\"height\":\"30px\"} --><\/p>\n<div class=\"wp-block-spacer\" style=\"height: 30px;\" aria-hidden=\"true\">&nbsp;<\/div>\n<p><!-- \/wp:spacer --><!-- wp:separator {\"className\":\"is-style-wide\"} --><\/p>\n<hr class=\"wp-block-separator has-alpha-channel-opacity is-style-wide\">\n<p><!-- \/wp:separator --><!-- wp:spacer {\"height\":\"30px\"} --><\/p>\n<div class=\"wp-block-spacer\" style=\"height: 30px;\" aria-hidden=\"true\">&nbsp;<\/div>\n<p><!-- \/wp:spacer --><!-- wp:heading {\"level\":3} --><\/p>\n<h3 class=\"wp-block-heading\">How can you support the work of the ME\/CFS Research Foundation?<\/h3>\n<p><!-- \/wp:heading --><!-- wp:paragraph --><\/p>\n<p>While progress has been made, there is still a long way to go before diagnosis, care and treatment of ME\/CFS patients will one day become an established medical and social standard. We at the ME\/CFS Research Foundation are focussing on biomedical research, which we see as a key element in solving these problems (more on this in <span style=\"text-decoration: underline;\"><a href=\"https:\/\/mecfs-research.org\/en\/fundingstrategy\/\" target=\"_blank\" rel=\"noreferrer noopener\">our research funding strategy<\/a><\/span> and in the recent <span style=\"text-decoration: underline;\"><a href=\"https:\/\/mecfs-research.org\/en\/reporting\/\" target=\"_blank\" rel=\"noreferrer noopener\">half year report<\/a><\/span>, which summarises our activities). To achieve this, we rely on broad support from private donors \u2013 those affected, relatives, families, friends, associations, schools, networks, companies, initiatives, event organisers and all supporters. If you are not able to provide direct support, you can share our stories and motivate others to help. Because only together can we achieve. this goal.<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:paragraph --><\/p>\n<p>We fully translate donations and other support into scientifically excellent research, networking and ultimately visible successes, i.e. improved ME\/CFS diagnostics and therapies. We are happy to work together with other organisations and initiatives - please contact us!<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:columns --><\/p>\n<div class=\"wp-block-columns\">\n<p><!-- wp:column --><\/p>\n<div class=\"wp-block-column\">\n<p><!-- wp:paragraph --><\/p>\n<p>We appreciate all kinds of<strong> support:<\/strong><\/p>\n<p><!-- \/wp:paragraph --><!-- wp:buttons --><\/p>\n<div class=\"wp-block-buttons\">\n<p><!-- wp:button --><\/p>\n<div class=\"wp-block-button\"><a class=\"wp-block-button__link wp-element-button\" href=\"https:\/\/mecfs-research.org\/en\/spenden\/\" target=\"_blank\" rel=\"noreferrer noopener\"><strong>Donate to ME\/CFS research<\/strong><\/a><\/div>\n<p><!-- \/wp:button --><\/p>\n<\/div>\n<p><!-- \/wp:buttons --><\/p>\n<\/div>\n<p><!-- \/wp:column --><!-- wp:column --><\/p>\n<div class=\"wp-block-column\">\n<p><!-- wp:paragraph --><\/p>\n<p>Please subscribe to our <strong>newsletter:<\/strong><\/p>\n<p><!-- \/wp:paragraph --><!-- wp:buttons --><\/p>\n<div class=\"wp-block-buttons\">\n<p><!-- wp:button --><\/p>\n<div class=\"wp-block-button\"><a class=\"wp-block-button__link wp-element-button\" href=\"https:\/\/mecfs-research.org\/en\/newsletter\/\" target=\"_blank\" rel=\"noreferrer noopener\"><strong>Subscribe to newsletter<\/strong><\/a><\/div>\n<p><!-- \/wp:button --><\/p>\n<\/div>\n<p><!-- \/wp:buttons --><\/p>\n<\/div>\n<p><!-- \/wp:column --><\/p>\n<\/div>\n<p><!-- \/wp:columns --><!-- wp:columns --><\/p>\n<div class=\"wp-block-columns\">\n<p><!-- wp:column --><\/p>\n<div class=\"wp-block-column\">\n<p><!-- wp:paragraph --><\/p>\n<p>And please help us expand our reach by<strong> following us on social media<\/strong>:&nbsp;<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:social-links {\"openInNewTab\":true,\"showLabels\":true,\"size\":\"has-normal-icon-size\",\"className\":\"is-style-logos-only\"} --><\/p>\n<ul class=\"wp-block-social-links has-normal-icon-size has-visible-labels is-style-logos-only\"><!-- wp:social-link {\"url\":\"https:\/\/www.instagram.com\/mecfs_research\/\",\"service\":\"instagram\"} \/--><!-- wp:social-link {\"url\":\"https:\/\/www.facebook.com\/profile.php?id=100092535845334\",\"service\":\"facebook\"} \/--><!-- wp:social-link {\"url\":\"https:\/\/www.linkedin.com\/company\/mecfs-research-foundation\/\",\"service\":\"linkedin\"} \/--><!-- wp:social-link {\"url\":\"https:\/\/twitter.com\/MECFSResearch\",\"service\":\"x\"} \/--><!-- wp:social-link {\"url\":\"https:\/\/www.threads.net\/@mecfs_research\",\"service\":\"threads\"} \/--><!-- wp:social-link {\"url\":\"https:\/\/www.youtube.com\/@MECFSResearchFoundation\",\"service\":\"youtube\"} \/--><!-- wp:social-link {\"url\":\"https:\/\/www.tiktok.com\/@mecfsresearchfoundation\",\"service\":\"tiktok\"} \/--><\/ul>\n<p><!-- \/wp:social-links --><\/p>\n<\/div>\n<p><!-- \/wp:column --><\/p>\n<\/div>\n<p><!-- \/wp:columns --><!-- wp:paragraph --><\/p>\n<p><strong>Thank you for your support! <\/strong><\/p>\n<p><!-- \/wp:paragraph --><!-- wp:paragraph --><\/p>\n<p><!-- \/wp:paragraph --><\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<\/div>","protected":false},"excerpt":{"rendered":"<p>Wir erg\u00e4nzen unsere bisherigen Berichte zum&nbsp;Stand der Umsetzung der Nationalen Dekade gegen Postinfekti\u00f6se Erkrankungen und die Kommentierung der ersten F\u00f6rderrichtline der &#8220;Nationalen Dekade&#8221;&nbsp;um den aktuellen Stand der Patient*innen-Beteiligung in den Gremien der &#8220;Nationalen Dekade&#8221;.&nbsp; Mit dem Startschuss der Nationalen Dekade gegen Postinfekti\u00f6se Erkrankungen zum 30. Januar 2026 erfolgte die Implementierung&nbsp;eines Steuerungskreises zur weiteren Koordinierung durch [&hellip;]<\/p>\n","protected":false},"author":2,"featured_media":17450,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_seopress_titles_title":"","_seopress_titles_desc":"","_seopress_robots_index":"","_seopress_robots_follow":"","_seopress_robots_imageindex":"","_seopress_robots_snippet":"","_seopress_robots_primary_cat":"","_seopress_robots_breadcrumbs":"","_seopress_robots_freeze_modified_date":"","_seopress_robots_custom_modified_date":"","_seopress_robots_canonical":"","_seopress_social_fb_title":"","_seopress_social_fb_desc":"","_seopress_social_fb_img":"","_seopress_social_fb_img_attachment_id":0,"_seopress_social_fb_img_width":0,"_seopress_social_fb_img_height":0,"_seopress_social_twitter_title":"","_seopress_social_twitter_desc":"","_seopress_social_twitter_img":"","_seopress_social_twitter_img_attachment_id":0,"_seopress_social_twitter_img_width":0,"_seopress_social_twitter_img_height":0,"_seopress_redirections_value":"","_seopress_redirections_enabled":"","_seopress_redirections_enabled_regex":"","_seopress_redirections_logged_status":"","_seopress_redirections_param":"","_seopress_redirections_type":0,"_seopress_analysis_target_kw":"","site-sidebar-layout":"default","site-content-layout":"","ast-site-content-layout":"default","site-content-style":"default","site-sidebar-style":"default","ast-global-header-display":"","ast-banner-title-visibility":"","ast-main-header-display":"","ast-hfb-above-header-display":"","ast-hfb-below-header-display":"","ast-hfb-mobile-header-display":"","site-post-title":"","ast-breadcrumbs-content":"","ast-featured-img":"","footer-sml-layout":"","ast-disable-related-posts":"","theme-transparent-header-meta":"","adv-header-id-meta":"","stick-header-meta":"","header-above-stick-meta":"","header-main-stick-meta":"","header-below-stick-meta":"","astra-migrate-meta-layouts":"set","ast-page-background-enabled":"default","ast-page-background-meta":{"desktop":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center 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